Shocking Good News!!

[tgillesp]

Well, I've got a whole cd, but I can't see anything noticeable at all on any of the other views and I wouldn't know which ones to post.  I could upload to photobucket and give you the link if you wanted to look through them.  Funny thing is, I had another follow up with my ENT today and told him what Dr. Chang said.  He asked who Dr. Chang was, says he hasn't heard of him.  When I told him he does Cyberknife, he shook his head and said no...no gamma knife/cyberknife nothing like that.  I tried explaining what I have learned about Gamma vs Cyber vs surgery and my goal of preserving hearing, etc, but he wouldn't listen to any of it and proceeded with "If it were my wife...I'd want it out...so I'm telling ya you need to get this thing taken out"  So he is still talking as if his opinion is I definitely have a tumor.  He says 5mm is so small that some may not be able to see it on an MRI.  He says Dr. Glasscock at Vandy would do his own MRI which would be much better than mine (how can you get much better than $6000 MRI?).  I mentioned I was sending my films to House and he does know who they are and does recommend I go there if not Vanderbuilt.  So my impression as I left him was he still believes I have a tumor and he is pro surgery all the way.  Well, I will see what House says and I have an appt with a neurotologist in Mobile, AL on the 28th.  I suppose by then I will have definite answers.  In the meantime though, I'm keeping the positive attitude that I don't. 

[CHD63]

Tracy .....

Sounds like you are right on top of things ...... way to go!  I know how nerve-wracking it must be to have such conflicting information, but trust me, it will all eventually be sorted out, make sense, and then you will know what is true and can then make an intelligent decision.  Once you have all of the facts, do not let anyone sway you to one particular treatment (or not).  You are the one who ultimately should make that decision.

Best thoughts and let us know what HEI says.

Clarice

[lori67]

Tracy,

I could be wrong, but I thought Dr. Glasscock at Vandy was retired.  There are still awesome doctors there, but I don't think he's still there.    Not that it really matters, but thought I'd mention it.

Lori

[tgillesp]

Lori,
I remembered you telling me that and asked my ENT's nurse when she called about the referral.  She said when she called Vandy and asked for Glasscock they did not say he was retired.  So I checked their website and he is still listed.   So I don't know. 

[QRM]

Wow!  just got my MRI bill and it was over $6000!!!  Of course, they will have to wait to see what insurance allows before they get a dime from me.  

No way thats crazy, I just had mine done (OK in Singapore) for about 700 us $,  they have the latest machines and you get the result instantly. A Doc. here is developing a new dual machine with Siemens see  http://www.a-star.edu.sg/People/OurResearchCommunity/HonoursAccolades/ManBehindtheMachineQAwithDavidTownsend/tabid/1036/Default.aspx

Almost worth booking a flight out here have a 5 star holiday, can catch the F1 night race, have a scan and then head back with change in your pocket!

[skamper]

Tracy,
Here's hoping the ENT is incorrect and that you are actually tumor free.  You made such uplifting and heartwarming comments on your first thread I almost cried.  You are totally correct when saying everyone here is awesome.  This was truely the best place I could ever find when I found out about my AN.  I am now 5 months post surgery and doing good. Still have my bad days but I'm a survior.
Keep us posted as to what all transpires with House and the other docs.
Good luck.
Susan

[PaulW]

Hi Tracy,
I have sent you a personal message with a link where you can upload your CD if you want to.

[tgillesp]

Got my call from House today.  Spoke with Dr. William Luxford.  He also says he doesn't see what would typically look like a tumor.  He said that what he does see, he also sees on the right side too, which does suggest something is going on on both sides, but he says a tumor should show up a bit lighter.  He says it may be just some inflammation.  He asked about my hearing and what tests I had.  I told him I had hearing loss in left ear many years ago, but got by on right ear, and I don't feel that left has gotten worse.  What led me to see ENT was hearing loss in right ear in June 2009 and of course, now with 2 ears losing hearing, I knew I needed help.  Only problem is I can never get my ENT to explain my hearing loss to me, so I can't really say.  (I'm calling tomorrow).  All he will tell me is I have 87% speech recognition "with" hearing aide in right ear and 82% "with" hearing aide in left ear.  That doesn't answer my question.  He also asked about my ABR test which was inconclusive and my VNG test which left ear passed and right ear failed.  So again, he said there is either inflammation or possibly (very small) AN on both sides (but not to jump to any conclusions and run out and get anything done).  His recommendation was have another MRI in 6 months and see if there is any change.  So, at least I am glad I can relax and be at peace for at least 6 months.

Thank you all for following my case, and I will be around, and certainly keep in touch.

[Jim Scott]

Tracy ~

I guess attenuated congratulations are in order.  It seems as if you probably don't have an acoustic neuroma but, unfortunately, the diagnosis was not conclusive, which is frustrating.  The hearing losses are still an issue and your ENT seems evasive, probably because he doesn't have a clear idea of the cause of the loss.  Perhaps he'll be more helpful now that a tumor has been essentially eliminated as a cause.  One hopes.  As you noted, at least you'll have some peace of mind until next spring.  That should make for a cheerier holiday season. 

Jim

[tgillesp]

Susan, I truly meant every word I said.  I have felt more love and support from people here during this last month of agony then any of my friends or family members.  I suppose it is much easier to have compassion for someone's struggles when you have been in their shoes.  I feel great knowing I can wait another 6 months, but I am not comforted by the fact that I can't get a definitive ruling on this.   In this last year, I have been told I have Meniere's Disease, then I don't, then an acoustic neuroma, then possibly not....I am frustrated with all the unanswered questions.  And Jim, as for the evasive ENT, I have made an appt with a neurotologist next Tuesday and I hope he will be easier to talk with.  If anyone is from the Mobile, AL area and knows Dr. Gracek, please let me know what you think. 

[lori67]

Tracy,

That must be a relief.  At least you can relax for about 6 months or so now.  I do hope they figure out what's causing the hearing issues though - and I hope it's something really easy to fix.

And I probably had Dr. Glasscock confused with another doctor there - I know one of them retired - just can't remember who....  oh well, what do you want - I had brain surgery, you know!   

Lori

[Funnydream]

Hearing loss and you have weird blips on your MRI? I'm not sure I would like that. Wait six months to see if the blips grow? I think I would want a biopsy. I do know there are some medical trials for ANs were they would put a catheter up your neck blood vessel and squirt chemo into the AN. That's what they told me on the phone. Also when I called them they asked if I have had a biopsy. So I know it can be done.

Clinical trials doctor in NY that asked if I had a biopsy done.
http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01083966

[ppearl214]

Please note that chemo is currently non-effective on AN's as it is a "benign" growth. There is no medical proof on "biopsies" technique noted and would ask you consider the advise given with caution.

Phyl

[Cheryl R]

Previous trials with avastin have been on NF2 pts who met certain criteria and was used to help bring hearing back.         This says unilateral but I would be hestitant to try it on a one sided AN.                  Tracy does not have a for sure AN so would esp not want this to be used when not sure exactly what is going on for her.                 Dr Slattery mentioned the use of Avastin at the last symposiums NF2 session and am sure will have further mention of it at next years event.                       Cheryl R

[Funnydream]

I am NOT saying to use Chemo. I'm saying get a Biopsy. Just pointing out that those doctors told me AN biopsy is possible.

For testing.

http://en.wikipedia.org/wiki/Biopsy